Table 8.
Risk factor | Summary | Illustrative quotations |
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Age | Age was considered an important and well‐understood cancer risk factor. Everyone who accepted risk stratification considered that age should be included. | P12: Because there's obviously all of this study gone into age before what they're doing now and there's a reason why you get invited to have bowel cancer screening at… I think is it 60… and breast cancer screening and prostate screening. So I think age is actually quite an important factor. (Jury 2, unfacilitated deliberation) |
P23: …it's up to the statisticians, I suppose, to work out where most of the cancers are and at what age they are happening, and then decide on when they're going to start the screening programmes. (Jury 3, unfacilitated deliberation) | ||
Sex | Particularly early on in the juries, many participants were uncomfortable about using sex in determining eligibility for screening. Later on, although they wanted equal screening for men and women, it was more acceptable when used in combination with other factors and justified biologically. | P5: No, because – okay, prostate cancer, [women] don't have a prostate, so that's logical, but anything else, general cancers, no. (Jury 1, unfacilitated deliberation) |
P16: …what about those people who don't identify in terms of a gender? (Jury 2, unfacilitated deliberation) | ||
Researcher: …whether you would consider sex as a risk factor alongside BMI, smoking, other lifestyle factors, genetics, etc, whether you would consider that to be acceptable, or did you discuss that? | ||
P8: We did, and I think that the issue is that it needs to be cancer specific, that if there is evidence that there is a greater prevalence of a particular cancer then that feeds into the risk factors. But if there isn't that evidence then assumptions shouldn't be made that the targeting would be male or female. (Jury 1, feedback session) |
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Lifestyle | A key point of discussion was the extent to which lifestyle (such as smoking, diet and physical activity) was within an individual's control. As a result, many who felt that it was a choice did not consider it fair to include lifestyle within risk models, and vice versa. The extent to which they were convinced it was associated with cancer risk also influenced this decision. | P10: I'd say that is the thing that sits most uncomfortably with me, but I do recognise it is those added lifestyle factors that mean that that person is more likely to develop cancer, so we have to screen those people. (Jury 1, unfacilitated deliberation) |
P12: Some lifestyle choices are actually big factors as well. (Jury 2, facilitated discussion) | ||
P17: With lifestyle I'm a little bit thinking both ways because on the one hand you could say that's a lifestyle choice and people that abuse themselves with drugs, alcohol, smoking… Do we classify them as bad people or are those habits they have brought on by the environments they live in and depravity and so forth? (Jury 2, facilitated discussion) | ||
P14: It sounds a bit cruel, this, but should we be wasting our time on them type of people that aren't interested when you've got people that might want to know? I know it's very controversial. (Jury 2, facilitated discussion) | ||
BMI | Closely linked to lifestyle, individuals had divergent perspectives on whether BMI/being overweight was the result of individual choices or a result of circumstances and opportunities outside the control of individuals, and whether it was associated with cancer risk or not, despite discussion with the experts. Consequently, many different views on including it in risk models were presented. | P12: We all know that if you are obese or morbidly obese it puts you at risk for lots of different diseases, cancer being one of them… So I think it's a bit dismissive to say that lifestyle choices are people's choices because they're not always and sometimes people need a lot of help with things. But I think for me definitely weight is a big thing from what the GPs said. (Jury 1, facilitated discussion) |
P23: Why would you turn around and use an athlete that's got a BMI of, say, 40? It's completely inaccurate, isn't it? | ||
P24: Yeah, I think the BMI is pretty flawed, to be honest. You know, I definitely don't agree that you should go on BMI because there's lots of variables on that. (Jury 3, facilitated discussion) |
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Geography and environment | Jury 1 suggested including locality to try to address observed health inequalities. Along similar lines, Jury 2 also wanted to include it as an indicator of pollution, although difficulties in measuring the data were raised. It did not come up in Jury 3. | P8: The one final thing that we had a bullet‐point about was other risk factors may be taken into consideration, such as locality, knowing that some areas, even down to quite small districts, have a higher propensity of certain cancers, so should we be looking at, you know, one part of the country, but even maybe one part of the local authority as opposed to another. (Jury 1, feedback session) |
P20: So, you know, how many people with a certain cancer after a certain age, have a look at where they live. So if you live in an urban environment is there a greater propensity to have a cancer or have an illness or be less well than in an environment where you've less population density, more green, fewer cars, that tends to suggest more affluence, but that would be self‐evident from your address so that can be screened out. (Jury 2, unfacilitated deliberation) | ||
Ethnicity | Juries 1 and 2 supported including ethnicity within risk prediction models, as long as it was clearly justified and communicated. They considered it to predict cancer risk and to be closely linked to genetics and family history. Ethnicity was not discussed in Jury 3. |
P17: The other thing that you can't really argue with is ethnicity… it could be certain [ethnic] groups would be more predisposed to certain things. P16 brought up the point about prostate cancer. [Their] ethnic group potentially is more likely to contract that than my ethnic group (overspeaking)— |
P13: But in [their] family history that should come up and therefore be tested, if you see what I mean. P12: Yeah, ethnicity is only one of the factors within that whole bulk of factors, isn't it, so it's BMI, smoking, ethnicity, weight, healthy eating, so that's just one of the factors. (Jury 2, unfacilitated deliberation) |
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P11: People could then say, ‘Well I'm being targeted, why am I being targeted because of my ethnicity?’ so that could be quite detrimental. Researcher: Yeah. I guess it comes back to the first comment that P17 made about your discussions, that it's really important how this is communicated to people. P20: Crucial. (Jury 2, feedback session) |
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Family history | Again, family history of cancer was considered to be an undisputable factor, equivalent to ethnicity and genetics, particularly in Jury 2 (although some expected that it might be redundant if genetics were included). Many felt that people with a family history of particular cancer should be able to be screened for it at a young age, which others understood was already current practice. A disadvantage was that some people don't know their family history, or it might be irrelevant, creating possible unfairness in access. | P16: Yeah, with [family history], you know, there is going to be a particular group what's going to be left out, I think we established that yesterday, those people who have been adopted, because they won't have their family history. (Jury 2, facilitated discussion) |
P24: I think we need to look at the factors that are stable, so it is genetics, it is, you know, looking at family history and those sort of things, that would be more of the appropriate methods. (Jury 3, facilitated discussion) | ||
P23: If you take the ‘60 s’ and ‘70 s’ we had what they call the ‘smog’, you know, the fog, and it wasn't fog, it was basically coal gas, you know, and the dust from coal fires, and that's what was predominantly causing cancers in all ages, so where do you stop with family history, you know? So for me that's just not accurate for today's times. (Jury 3, unfacilitated deliberation) | ||
P29: [P22] said that if someone's already got a family history they're already testing it, if I'm correct in what I heard. Is that correct, P22? P22: Yeah. Yeah, because my cousins have got the BRCA gene. P29: …. We may actually say, ‘We don't need to do this extra family testing. Because you've got a potential running in the family history, we don't need to do two tests’. The family doesn't need to have this second test because it'll become part of the overall test, so when we say actually it's age, sex, genetics and actually, by definition, family history, because we've already done that and we know it's a tick in the box. (Jury 3, unfacilitated deliberation) | ||
Genetics | The majority of the participants were very positive about including genetics and seemed to believe that it was a reliable and significant risk predictor that could be measured at a young age. That said, many seemed to believe that all genetic risk was inherited by a few dominant genes. Also, they expressed concerns about collecting genetic information. |
P3: For me, it's the explanation from Simon today about genetic codes and how it's used, how it's applied. It's created more awareness and led me to like actually accept that as a means or as part of like the risk score approach. P1: I fully agree with P3 about the genetic thing. It's opened my eyes that it's not as big and bad and scary as it may be promoted. (Jury 1, unfacilitated deliberation) |
P17: A show of hands. Who thinks genetics and family history should be the prime factor?[7/10 clearly raise hands] P15: I think it should be weighted heavily, yeah… the most significant indicator. (Jury 2, unfacilitated deliberation) | ||
P29: …that actually gives you the confidence that we're actually getting the right people. So I know the genetics will scare people off but actually by having that as part of the complex testing… And you may say age, sex and genetics but including genetics is actually hard fact. I don't have to tell my GP I drink twenty or whatever, it's there, they take the blood test, it's factual. … All of the [other lifestyle factors], ‘Ooh there's a chance’, but you've got this BRCA gene – don't ask me what it is – but it's bad or there's a possibility that you could get something, that gives us some certainty. (Jury 3, unfacilitated deliberation) | ||
P22: And obviously the thing about human rights and the ethics connected to genetics, you know, we can't secretly test people to see if they've got cancer genes so how do we do it, ensuring that people are turning up to do those tests? (Jury 3, feedback session) |
Abbreviation: BMI, body mass index.
Note: Positive comments (), negative comments (), and neutral or mixed comments () about using the risk factor within risk stratification to determine eligibility for cancer screening.